Saturday, August 28, 2010

I'll Pray for You










Daniel enjoyed a good laugh and particularly good satire, particularly in songs. He also enjoyed the irreverent in terms of songs from time to time. I heard a song this week and looked up the video, and I think he would have found this amusing.
As much as we all love God, and our fellow man,I am sure we have all had moments where we have felt even just for a moment, like the man in the video.


























Tuesday, August 24, 2010

Hummingbirds

Today my husband and I attended the funeral of one of our neighbors. She is a fine woman who raised three sons, one of whom became a minister. She is not too much older than I, so she must have started having children fairly young.. This is a reminder that all of our days could be shorter than we had planned.

This is a poem they used in the funeral
service.

"I Will Always Be Here"

Family,please don't mourn for me
I am still here, though you don't see
I am right by your side each night and day
And within your heart I long to stay

My body is gone, but I am always near
I'm everything you feel, see or hear
My spirit is free but I will never depart
As long as you keep me alive in your heart

I will never wander out of your sight
I am the brightest star on a summer night
I will never be beyond your reach
I am the warm moist sand when your at the beach

I am the colorful leaves when Autumn's around
And the pure white snow that blankets the ground
I am the beautiful flowers of which you're so fond
The clear cool water in a quiet pond

I'm the first bright blossom you will see in the Spring
The first warm raindrop that April will bring
I am the first ray of light when the sun starts to
shine
And you will see that the face in the moon is mine

When you start thinking there's no one to love you
You can talk to me through the Lord above you
I will whisper my answer through the leaves on the
trees
And you will feel my presence in the soft summer breeze

I am the hot salty tears that flow when you weep
And the beautiful dreams thatcome while you sleep
I am the smile you see on a baby's face
Just look for me, family, I am every place

Author of Poem is unknown to me.



Below is a short film made by Daniel's older brother Adam, the sculptor, who rescues a hummingbird with heat exhaustion here on the farm. This is the farm that Daniel enjoyed so much. The female hummingbird survived and is still here on the farm, preparing to migrate South with her own family.




















Love The Earth, Hummingbirds from Veraseri on Vimeo.

Saturday, August 21, 2010

A Poem







I promise I won't cry forever
But I need to just today.
I promise I will remember
How to live and how to play.

I promise that I'll dry my tears
When the heartache goes away.
I promise that it won't take years
But I need another day.

I promise that I'll live my life
As you would want me to.
I promise when I'm facing strife
I'll face it straight and true.

I promise I will endeavor
To do the best I can each day.
I promise I won't cry forever
But I need to just today.


Author of poem unknown to me.







Tuesday, August 17, 2010

Weeks of Birthdays

August is an exceptionally busy month here normally, but especially this year. In August, James, Adam and I all have birthdays in fairly rapid succession. In addition, everyone who still attends college or school is busy getting ready for an end of the month start.
Sometimes I can't believe that we've having all these birthdays without Daniel being here, but then other times,I think he is.





























Monday, August 9, 2010

News from Far Away










Today I spoke with researchers at the Mayo Clinic. They have had Daniel's blood for about a year, and are working on it now. They are doing complex and expensive testing only possible in a few places in the world. Daniel's blood is being DNA mapped looking for specific known markers which might indicate that he had a version of Long QT Syndrome. There are many different types of this particular syndrome. From the history,(specifically of his passing, and of the failure of immediate CPR to revive him,) they believe the most likely type was Long QT Type 3, which can do exactly what it appears to have done in Daniel, which is to cause sudden death resistant to immediate CPR, many times without any prodrome or advance symptoms or history.

http://www.qtsyndrome.ch/faq.html


They anticipate some type of an answer as to whether Daniel carried clear genetic markers for Long QT syndrome, particularly type 3, within the next several months. This would be important not only because we would know what happened, but also because it impacts the conduction cardiological management of his siblings, and ultimately our entire line.
It appears that people with Long QT markers may have a normal or only slightly unusual EKG marked by a slight deviation in electrical axis most of the time, but then under stress, joy, excitement, physical activity, OTC medications, or fluid and electrolyte imbalance, may trip into an unusual rhythm which is not correctable, and ultimately is incompatible with life.
It would be important to make this diagnosis because despite the borderline EKGs of siblings, they would be managed differently and perhaps more aggressively throughout life, should one of the known marker genes be located.
There is also the possibility that Daniel did pass as the result of a disturbance in heart rhythm, but that he has a genetic marker which has not yet been recognized and noted to be associated with a fatal arrhythmic syndrome.
You might think that edging toward an answer would be a relief, or a closure, but it is not. My dear boy left us in body, almost two years ago, and the hole is so wide in our lives that I must work not to fall in. The fact that this could touch our other children, nieces, nephews, and others is so frightening to me, that even denial looks attractive, a coping mechanism I only rarely use.

These are some websites in which, at the moment, Daniel is memorialized:

http://www.qtsyndrome.ch/memoriam.html

http://www.healthsystem.virginia.edu/internet/virtualtree/remembrancetree.cfm

http://www.sudc.org/






** I love and miss you Bug. **




The second song is sung by Jody McBrayer, a singer formerly a member of the group "Avalon". Jody left the group due to a viral heart problem. We pray for his recovery.

Friday, August 6, 2010

I Still Don't Eat Casseroles



Even after almost two years, I still can't eat casseroles, which is a shame because Daniel loved them, and occasionally, so did my Dad.







All These Years After the Funeral

All these years after the funeral,
casseroles still taste like death.
Salted with tears,
layered with mournful noodles,
every bite is bitter with grief.

It isn’t that I didn’t appreciate
those acts of love
brought in hot and steaming,
bubbling with cheery cheese,
bright vegetables chopped like confetti
and ready to feed the children.

It isn’t that I meant to be rude
to good friends trying to help;
but I was an alien in my own kitchen
learning to decipher the recipe for sorrow,
attempting to elude panic simmering in my heart
while casseroles, cakes, and shivering Jello salads
gathered on the table like disease.

All these years after the funeral
my heartbreak has nearly healed
but my tastebuds are damaged forever.

Author of poem unknown to me.




Thursday, August 5, 2010

The Little Place













Do you remember the part in the film "Somewhere in Time" when the character Richard, finds a penny from the present day, and then is instantly transported back to our time, never to see his beloved Elise again while on this Earth ? I remember seeing this film in the movies and hearing the gasps across the theatre, as I shuddered. Losing our son to a trip to the bathroom is a lot like that moment. Unexpected, permanent, shocking, and horrible. I know that Daniel would not want me to focus on the last moments of his life, or what happened on only one day, so I am working on brainwashing.....no.......reprogramming, myself. When I return to those horrible moments of finding Daniel, doing CPR and the bizarre day that followed, I now try to focus on something wonderful and special that we did together or that we did as a family. I am going to try to do that today. I don't want to forget any time with Daniel, even that last difficult day. I want to remember how hard we, and the rescuers who arrived in the helicopter, worked to try to save him, but I know, that I must not continue to second guess myself and I must not ruminate here.
Today I will remember one of the wonderful moments we had together. When Daniel was two, we decided that living in the suburbs would make our children fabulous consumers. They already knew every fast food restaurant within a ten mile radius, and we hadn't been to 90% of them. They also loved Toys R Us, Costco and Sam's Club. Tae Kwon Do lessons alone could not keep us in the suburbs. We decided that we wanted our children to learn about animals, to hatch chicks, raise rabbits, have a horse, and perhaps a goat. We wanted them to be able to change their own oil, and perhaps the starter to their car. We wanted them, in short, to use their creativity and to learn to appreciate the world that God made, not so much the stores than man did. We wanted them to have some measure of self sufficiency as well. So, we bought country land and began to build a house. It wasn't completed until Daniel was three, and at that time, the children helped us pack everything in a huge number of strong boxes (the free ones from the liquor store.) We stacked these same size boxes in the large finished basement which opened into a garage, where the boxes could be easily loaded and moved from the garage area to a moving van. It took us a couple of weeks to do this. In that time, the three older kids restacked some of these boxes,and made a bit of a maze and a playhouse of sorts for Daniel. One day, as I packed and cleaned up another room in the basement, I had occasion to look for Daniel, and I called out "Daniel, where are you ?" To which he answered in typical adorable fashion, "I'm in the little place". Apparently, the playhouse made of stacked boxes all around was a special place for him. He was sitting on a box of books, reading an early reader, inside "the little place". He sat for a long time reading his books in total silence. He never forgot how much he loved a place small enough that it would fit only him. He was cosy and for those days before we moved, it was his place alone.
I am posting pictures today in memory of the little place. These are small homes for single people or small families, which would have fascinated Daniel when he was small, or perhaps even would today. I hope all of you find a small, cosy place in which you feel safe and secure, as Daniel did.



This haunting version of Danny Boy is sung by Eva Cassidy who went to Heaven six months after Daniel was born. In the song afterward, the Eva to which Mary Chapin Carpenter is referring, is Eva Cassidy.
In the following